The foundation is already in contact with Robert Melcangi that’s why I thought it would be reasonable to suggest the idea. Since you’re talking about helping the community why don’t you post a video talking about your experience that would be a huge help.
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My job doesn’t make it possible to make videos on YouTube talking about my sexual dysfunction but I’d love to see yours. What’s the link? I’ve done the survey and 
+ contacted a lot of people in other forum communities and Facebook groups recommending doing the survey. Any other ideas?
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That’s fucked up if your job would fire you based on your situation with a drug that caused you harm.
I’m going to make a video as well just suck at editing videos so I’ll have to do a one take. If we could get at least 100 of us here on the forum to make a video it would make a huuuuuge difference in our situation.
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Even more valuable would be if we could get people from different demographics and languages in order to be multicultural and less white male.
I’m Latino and middle eastern lol. Not sure what race has to do with this though
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Propecia, Accutane, and SSRIs affect all types of people so the videos should have all kinds of people. So I hope we aren’t disproportionately publicizing work to a Western male population.
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Okay gotcha I guess it makes sense.
Besides, and this idea has already been brought up, a „post drug talk“ with a popular youtuber may be quite helpful even in gathering donations. If one video for instance is clicked by about 300.000 people and 10 % are donating minimum a dollar that would make up 30.000 USD or more. Don’t know if that’s naive but I liked this Idea a lot.
People nowadays donate for so many things so why not for this good cause. Eventually 10-15 % of western population take SSRI for instance so many may relate to this problem. Finasteride is probably also used by thousands among the audience of any cool hip youtuber.
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I wonder if anyone knows someone at Vice or something like that. Anyway, it would be important to have a substantial amount of content before presenting higher level publicization possibility to anyone big.
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Vice had an article on sex and antidepressants and they also mentioned pssd but only briefly in a subordinate clause (I used google translate for „subordinate clause“ haha hope it fits).
Yeah Vice does cover many things like that so maybe we shall contact them.
Vice did a brief article if we could get a documentary about PFS that would be awesome to
Yeah it should cover the whole post drug spectrum. Maybe we should just contact them and see? It certainly helps that they at least acknowledge pfs and pssd. Not putting my expectations high though that they’d do a short documentary.
Anyway we may follow a couple of approaches - a foundation YouTube webchannel with patient stories is great when edited in a modern and „appealing“ way. However I suppose stuff like SEO/paying YouTube or whatsoever money to reach out more effectively to a greater portion of people would make sense. Simple videos without funded promotion rarely get huge audiences. It’s like with Facebook when you pay money so more people are likely to see your content.
You know the only true way to get scientists and real people to recognise this condition is to firstly stop hiding behind avatars. Fuck being anonymous, how will a video of you talking about an illness really affect your life or Job? If anything it will make people understand you better. If there’s one thing stopping this condition getting recognised it is the fact that people aren’t willing to speak up, like I said before there is no way that they could deny 100 plus video testimonials of people with PFS talking about their conditions in detail instead some hide in their bedrooms disabled and nobody will ever give care why? because it “doesn’t exist!” and the thing is Merck know that men won’t come out willingly and talk about this issue because it’s so personal but we can either wait for this condition to get recognised which who knows will ever happen because seemingly we’re all just a bunch of hypochondriacs running around playing victim or we can have people saying to themselves “wow, where are all these PFS victims coming from there must be more to this drug!” there is zero excuse except that one would feel ashamed, embarrassed and afraid of the reaction but ask yourselves is it better to be laughed at by a few toolbags or finally have PFS recognised as a real condition and have institutions looking into this phenomenon, I want my life back as does other but we can’t expect to be handed to us.
We need to show the human aspect to this disease or we can just let our cries fade off into the distant while these bastards continue to get away with murder. It’s a choice and the choice is yours, ask not what this foundation can do for you but what you can do for the foundation. So far from what I can see- myself, Douglas Mitchell RIP, and Paul Innes are the only people I can see that detailed our stories through video means.
I agree with you in many aspects. Still, the EMA also acknowledged persisting side effects after quitting SSRIs and this wasn’t as far as I know advanced by a video campaign of sufferers showing their faces. I sure agree though that this can create an impact but apparently it is not the conditio sine qua non.
I‘d consider addressing opinion leaders from the medical community, collaborating with German PSSD group, setting up a prominent video with a famous vlogger to be very relevant.
Showing ones face has the potential for further awareness but I might assume this would also work when faces are blurred.correct me if I’m wrong.
See the PSSD ZDF German tv Show - faces are not entirely shown.
The question is:
What happens next after we gathered the data etc.? Just trying to point out that the official acknowledgement of rare yet horrible persistent side effects don’t necessarily attract research/initiate immediate action.
So what’s - roughly - the long term plan?(referring this to the mods and admins)
SSRI’s are much widely distributed so there’s likely a larger population of people who get side effects and reporting them compared to Finasteride. PFS affects a small subset of people and as such needs as much media exposure as possible. They can blur out their faces as the video still shows the human element and provides proof that PFS is real otherwise this disease doesn’t really exist in the worlds eyes.
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Cman and others,
If you wish to read my post(s) re: a court case I was involved in with Merck, I posted in “General Discussion” under the title, “Massachusetts Supreme Court ruling–my finasteride legal case (links)”.
Also, “frustrated”, I belatedly replied to you, as well–after only seeing your responses today.
BR